*the following post was written a few weeks ago, at the beginning of this journey. it's taken a while to work through the information and be ready to share this part of our life. but here goes...*
sometimes i wish that hiba would just flap her arms and run in circles. that we would have to have her wear a helmet or bite herself so she would be obviously different.
because she is not obviously different. like when we are at the grocery store and the cookies are a different size than she expected them to be, so there is a meltdown. or when we are at ihop and they seat us at a table instead of the booth that we've sat in the last three times we have been there, so there is a fit. it looks like she is just being a brat. and when i try to fix it, it looks like i'm just giving in to whatever she wants. and i don't want to blame behaviors on her autism or accept negative behaviors, but when i'm in the middle of the grocery store, you bet i'm gonna do whatever i can to make it go smoothly. even if it means buying her a cookie that meets her expectations.
and it is because of her autism. but the thing is, you can't tell by looking. she talks. she doesn't spin. she doesn't hurt herself. she looks so normal. there's just a little different wiring in her brain that makes things hard sometimes. and there's no "i have high functioning autism so i might have outbursts that seem bratty but are really me just trying to process stressful information" t-shirts that i can buy her. i don't want to treat her differently and not discipline her and just give into everything that she wants. but, i don't want to stress her out and i don't want to punish her for not being able to think and process information and changes the way that i wish she would. and i don't want other moms looking at me like they know what my daughter needs and i need to just "take care of that situation".
it's hard enough adjusting to this all without having to do it in normal, everyday life. if our family could just live in a bubble for a few months, that would be great. we could come up with an action plan, we could start therapy with hiba, jason and i could adjust to a new way of thinking about her actions and reactions and we could figure out what is sin nature and what is autism and figure out how to deal with it. and we could do it without others watching.
but, obviously, that is not possible. we both work full time, so hiba is in preschool. we have to go grocery shopping. we go to church. we go out to eat. we hang out with friends. our lives cannot stop as we adjust to this. and on the outside, everything looks the same. everyone looks normal. but on the insides, we're all just a little bit different. we're all processing life through a little different lens than most of the people we are standing next to. and it's tough.
it's tough because of what our challenge is, in and of itself. figuring out what high functioning autism is is tough. figuring out how it affects hiba is tough. figuring out how it affects our family is tough. and then add on top of that figuring out how to do all of this in a public eye. not that we are some powerful family that everyone watches. thank goodness we are not celebrities. but, we do have friends. we do go places. people see us. and let's face it, people love to judge other people. (right? or am i just a really bad person? please say you're with me on this one...) so we are having to figure out how to navigate life, life that has been majorly altered with three little words, life that is never going to be the same as it was on may 30, life that is so different from what most people know. all with people watching. and all with people not knowing what is really going on. and that is tough.
sometimes i wish that hiba would just flap her arms and run in circles. that we would have to have her wear a helmet or bite herself so she would be obviously different.
because she is not obviously different. like when we are at the grocery store and the cookies are a different size than she expected them to be, so there is a meltdown. or when we are at ihop and they seat us at a table instead of the booth that we've sat in the last three times we have been there, so there is a fit. it looks like she is just being a brat. and when i try to fix it, it looks like i'm just giving in to whatever she wants. and i don't want to blame behaviors on her autism or accept negative behaviors, but when i'm in the middle of the grocery store, you bet i'm gonna do whatever i can to make it go smoothly. even if it means buying her a cookie that meets her expectations.
and it is because of her autism. but the thing is, you can't tell by looking. she talks. she doesn't spin. she doesn't hurt herself. she looks so normal. there's just a little different wiring in her brain that makes things hard sometimes. and there's no "i have high functioning autism so i might have outbursts that seem bratty but are really me just trying to process stressful information" t-shirts that i can buy her. i don't want to treat her differently and not discipline her and just give into everything that she wants. but, i don't want to stress her out and i don't want to punish her for not being able to think and process information and changes the way that i wish she would. and i don't want other moms looking at me like they know what my daughter needs and i need to just "take care of that situation".
it's hard enough adjusting to this all without having to do it in normal, everyday life. if our family could just live in a bubble for a few months, that would be great. we could come up with an action plan, we could start therapy with hiba, jason and i could adjust to a new way of thinking about her actions and reactions and we could figure out what is sin nature and what is autism and figure out how to deal with it. and we could do it without others watching.
but, obviously, that is not possible. we both work full time, so hiba is in preschool. we have to go grocery shopping. we go to church. we go out to eat. we hang out with friends. our lives cannot stop as we adjust to this. and on the outside, everything looks the same. everyone looks normal. but on the insides, we're all just a little bit different. we're all processing life through a little different lens than most of the people we are standing next to. and it's tough.
it's tough because of what our challenge is, in and of itself. figuring out what high functioning autism is is tough. figuring out how it affects hiba is tough. figuring out how it affects our family is tough. and then add on top of that figuring out how to do all of this in a public eye. not that we are some powerful family that everyone watches. thank goodness we are not celebrities. but, we do have friends. we do go places. people see us. and let's face it, people love to judge other people. (right? or am i just a really bad person? please say you're with me on this one...) so we are having to figure out how to navigate life, life that has been majorly altered with three little words, life that is never going to be the same as it was on may 30, life that is so different from what most people know. all with people watching. and all with people not knowing what is really going on. and that is tough.
1 comment:
We'll be praying as you go through this adjustment. As I was reading this post, though, I kept wishing that we could read a post of what is going through Hiba's mind over the past month. Even though it's been way tougher on you, I bet her post might say things about how life has suddenly become a little less stressful and suddenly you seem to understand her a little better. How you don't get as frustrated at times when she's not trying to frustrate you. I would have such a hard time, too, with knowing people were probably criticizing my parenting, but I think Hiba will be celebrating your efforts, even when you can't see it.
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